Giving Researchers a Face for Alzheimer’s

When Richard Kluzak, a retired real estate developer in Naperville, traveled to London last spring with his wife to visit their daughter, the festive quickly morphed into the frustrating. The father, 72, did not recognize his daughter, 43.

Mr. Kluzak was diagnosed by an English neurologist as exhibiting early stage Alzheimer’s disease, not long after he’d been told back home that he was in good health.

His predicament explained his and his wife’s presence last week in a Chicago conference room whose stuffy, antiseptic air belied the pathos of a gathering marked by slivers of hope and ample uncertainty. For the first time, young Northwestern University neuroscience researchers left their labs to meet victims of a recently diagnosed disease that the scientists are struggling to understand.

Physicians, not researchers, deal with such patients all the time. “For the most part, there’s just no forum for a relationship between us and patients,” said Luke Sebel, 27, an Atlanta native whose research is focusing on memory via a combined M.D.-Ph.D. program at the Feinberg School of Medicine at Northwestern.

The venue was inside Prentice Women’s Hospital, a Ritz-Carlton of care where more than 12,000 babies were delivered last year. Emblems of birth and renewal are omnipresent: new dads with plastic security bracelets, flowers going up in elevators, the blue and pink outfits from Baby Gap, parking attendants installing car seats, and nervous moms alighting from wheelchairs and being driven home to a different life.

This meeting concerned the other end of life’s continuum. Its origin traces back 13 years when early stage Alzheimer’s was diagnosed in a former Northwestern physician by Dr. Marsel Mesulam, director of the Cognitive Neurology and Alzheimer’s Disease Center at Feinberg.

The physician still had much to give, so it was decided that he serve as a mentor to students and to create a “buddy program” to benefit patients and students. The program is aided by a grant from the Glen and Wendy Miller Family Foundation. Mrs. Miller is a former Glencoe elementary school teacher whose late mother suffered from Alzheimer’s.

About a dozen patients are paired with medical students each year for four informal hours a month. They might go to the symphony, take a walk or have coffee. Despite the brief encounters, relations seem warm, with the students clearly protective of their older chums.

“The students don’t get credit, but I do give them a nice certificate with Dr. Mesulam’s signature and a letter for their file,” said Darby Morhardt, education director at the federally financed cognitive neurology center.

This encounter included Mr. Sebel and four other neuroscience doctoral students examining how the brain stores information. Yomayra Guzman focuses on the impact of anxiety on learning, while Tereza Smejkalova looks at the role of estrogen. Austin Graves studies memory at the cellular level. Tristan Hendrick’s interest involves chemicals released in the brain’s synapses.

The 90-minute session, with eight “buddy” patients as young as a 54-year-old former law magazine editor, opened with a slide presentation on the brain, neurons and the little we know about Alzheimer’s. Plaque buildup plays a part in brain damage, but science is just not sure how.

The patients were attentive and respectful, if also impatient and a bit at sea when the researchers asked them questions (“When diagnosed, did they give you resources to contact others?”). One gentleman, whose wife has the disease, found “a disconnect between people in your field and us,” he said. “The only thing relevant to us is the slope of the memory loss, and you don’t know how to slow it down.”

The sister of Esther LeVine, a patient, exhibited occasional anger. Ms. LeVine, a smiling 70-year-old and silver-haired Katharine Hepburn look-alike, later conceded to me the sister’s hurt about the situation. She herself remains upbeat two years after her diagnosis.

The awful threat to memory was displayed by a mother and daughter. They don’t agree on what the mother understands about her condition. That helped explain the session’s ultimate utility to the young researchers, and reminds us of how people in the medical system can so easily and needlessly wind up emotionally removed from painful flesh-and-blood realities enveloping the rest of us.